Abstract:

From April 2004, the policy for neonatal screening for sickle cell in England has been to base the screening on universal principles (offer the screening to all new-born babies) rather than selective screening (an attempt to target screening by only offering screening to those children from ethnic groups deemed to be at higher risk of sickle cell/thalassaemia). At the time of writing the policy decision for antenatal screening has not been finalised, but will entail universal screening in some areas of England. This paper reports on 16 depth interviews conducted with 27 specialist haemoglobinopathy counsellors on their experiences of the ethnicity screening question and sickle cell/thalassaemia risk. They report dealing with a significant number of cases where the client has self-identified as 'White English' and does not know of any other relevant ancestry that might place them at risk of sickle cell/thalassaemia. They are not therefore carriers of Medi
terranean, North African, Arab, or Iranian descent, nor are they of so-called mixed heritage, all of whom might self describe as 'white'. White English carriers are reported to react badly to the news they carry sickle cell or beta-thalassaemia trait. They are reported to 'freak out' and say they are 'tainted', 'unclean' and 'contaminated' by a disorder they associate strongly with being 'black'. The counsellors, themselves largely of African/Caribbean descent, are obliged to absorb the racism implicit in these reactions, but develop some interesting strategies for 'cooling out' such White English carriers.